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Living with cancer· Appointment prep

Appointment sheet: Parathyroid carcinoma

One page to bring and write on: your details, the questions for Parathyroid carcinoma plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Parathyroid carcinoma

Prepared with OnCo (onco.cc/prep/parathyroid-carcinoma/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

13 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Serum calcium and PTH, CDC73mutation and parafibromin loss, PGP9.5 and galectin-3 immunostaining, Ki-67 and capsular or vascular invasion), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Suspected or confirmed carcinoma, resectable
  1. 5.For my situation (suspected or confirmed carcinoma, resectable), which of the standard options do you recommend and why?
Hypercalcaemia, unresectable or metastatic disease
  1. 6.For my situation (hypercalcaemia, unresectable or metastatic disease), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Cinacalcet, and what side effects should I expect?
All patients
  1. 8.For my situation (all patients), which of the standard options do you recommend and why?
Any stage
  1. 9.Are there clinical trials I could join, for example of Bone-modifying agents (bisphosphonates, denosumab), Immune checkpoint inhibitors?
  2. 10.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 11.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 12.I read that “Preoperative diagnosis: no reliable imaging or biochemical threshold, so many patients have inadequate first surgery”. How does that affect my plan?
  5. 13.I read that “No effective systemic anticancer therapy for metastatic disease; genomic profiling for actionable alterations and immunotherapy case series are the current approach”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: Serum calcium and PTH (typically far above adenoma levels), CDC73 (HRPT2) mutation and parafibromin loss, PGP9.5 and galectin-3 immunostaining, Ki-67 and capsular or vascular invasion (WHO 2022 criteria).

Scans and tests linked to this cancer: Germline (hereditary) testing.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Suspected or confirmed carcinoma, resectable: En bloc resection with ipsilateral thyroid lobectomy and removal of adherent tissue, avoiding capsule rupture; re-resection for loco-regional recurrence. (Thyroid cancer)
  • Hypercalcaemia, unresectable or metastatic disease: Cinacalcet titrated to calcium, denosumab or intravenous bisphosphonate, hydration; palliative resection or ablation of metastases to reduce PTH burden. (Bone-modifying agents (bisphosphonates, denosumab), Cinacalcet)
  • All patients: Germline CDC73 testing and family counselling; surveillance for jaw and renal tumours in carriers. (Germline (hereditary) testing, Hereditary cancer syndromes)

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call